Former Little Mix star Jesy Nelson has shared an emotional and revealing account of her twin daughters' diagnosis with a rare genetic disorder, highlighting a critical gap in medical awareness that her own mother helped to bridge.
A Mother's Instinct Proves Crucial
Nelson's twin girls, Ocean Jade and Story Monroe Nelson-Foster, received a diagnosis of Spinal Muscular Atrophy (SMA) Type 1 on 4 January 2026. This serious condition affects motor neurons, leading to progressive muscle weakness. However, the path to this diagnosis was fraught with oversight.
Missed Signs by Healthcare Professionals
During a candid interview on Sky News' The UK Tonight programme on 29 January, Nelson explained that medical staff initially failed to recognise the early indicators of SMA in her infants. It was her mother who first noticed a concerning lack of leg movement in the twins, a classic symptom that had been overlooked by trained healthcare providers.
This incident has starkly illuminated what Nelson describes as a significant and worrying lack of awareness surrounding Spinal Muscular Atrophy within the UK's health system. The singer emphasised that without her mother's vigilant observation, the diagnosis could have been delayed further, potentially worsening the twins' prognosis.
Campaigning for Change in Newborn Screening
Motivated by her personal experience, Jesy Nelson is now spearheading a campaign to have SMA screening added to the routine newborn tests conducted across the United Kingdom. Currently, SMA is not part of the standard heel-prick test offered to all babies shortly after birth.
"Early detection is absolutely vital for conditions like SMA," Nelson stated during her television appearance. "If we can identify it sooner, we can start interventions and treatments much earlier, which can dramatically improve outcomes for affected children."
The Importance of Public Awareness
Nelson's story underscores the dual need for both enhanced professional training and greater public education about rare genetic conditions. Spinal Muscular Atrophy, while uncommon, is the leading genetic cause of death in infants, making awareness campaigns and screening initiatives critically important.
The singer hopes that by sharing her family's journey, she can help prevent other parents from facing similar diagnostic delays. Her advocacy aims to ensure that no child's condition goes unnoticed due to a lack of knowledge or routine screening protocols.
